Wednesday, 1 June 2016

Why we shouldn’t call it ‘chronic fatigue syndrome’

It started with a bout of
mononucleosis. Two college roommates and I got it at the same time. They felt
better after a month. I didn’t. Decades later, I’m still living with
bone-penetrating exhaustion and brain fog as thick as pea soup. I spent much of
my 30s and 40s tethered to my bed, too weak to function. I’ve had to abandon
both my career in international relations and my social life.

My mono had morphed into
something more permanent, a neuroimmune disease the World Health Organization
calls myalgic encephalomyelitis (ME). It affects between 1 million and 2.5million Americans and 17 million people worldwide.

It’s a disease that can force you
to put your life on hold. According to the Institute of Medicine, it can reduce
an individual’s ability to function more than heart failure, multiple
sclerosis, or end-stage kidney disease. There’s no generally accepted diagnosis
for ME. It can take up to five years to be accurately diagnosed, and up to 90
percent of people with it are never accurately diagnosed. Worse still, the FDA
hasn’t given the green light to any treatments for it.

Those of us with ME have long
hoped the government would come to our aid. Instead, in 1988 it gave the
disease a new name, chronic fatigue syndrome, that stigmatizes people with this
condition. And the National Institutes of Health has generally looked the other
way. Year after year, the NIH has set aside a paltry $5 million to $7 million
of its $30 billion annual budget for ME research. Compare that with the $100
million set aside for research on multiple sclerosis, which affects about
400,000 Americans.

Labelling ME as chronic fatigue
syndrome gives doctors, the media, the public, and even family members
permission to assume individuals are exaggerating, that we’re simply refusing to
pull it together. With such a name, who could fault folks for thinking we just
need to take a nap, some fish oil, and a vigorous walk? This type of thinking
has led to individuals with ME, some too sick to care for themselves, being
abandoned by both disbelieving families and physicians.

Last October, two things seemed
poised to break the logjam of government neglect and stigmatizing research.
First, investigative journalist and public health expert David Tuller
successfully debunked the PACE study, a randomized trial that had cemented the
widely held but erroneous belief that ME is a psychological disorder rather
than a physical illness. Tuller’s work showed that the many flaws in the
trial’s methodology seriously undermined the credibility of the treatments it
supported — cognitive behavior therapy and graded exercise therapy. The
investigation prompted 42 scientists and experts from Columbia, Harvard,
Stanford, Berkeley, and elsewhere to release an open letter to the Lancet
supporting Tuller’s analysis and demanding an independent analysis of the
trial.

As any ME patient can tell you,
behavior or talk therapy and pushing yourself physically won’t make you well.
In fact, exercise often causes me to relapse, requiring weeks or months of
home-bound bedrest. Telling an ME patient to exercise is dangerous, tantamount
to prescribing sugar to a diabetic.

Also last October, the federal
government promised to bolster research on what it now calls ME/CFS. Many of us
thought this condition would finally get the type of government attention and
funding offered to multiple sclerosis and Parkinson’s disease, two other
neurological diseases also without a known cause or cure. Unfortunately, half a
year later, the government falls short in making a serious commitment to ME.
The NIH’s offering in the last six months includes one study of just 40 ME/CFS
patients that will take at least two years to complete and some supplemental
research money to expand grants already awarded.

In an effort to get on the US
Department of Health and Human Services’s radar, ME patients and their
caregivers will stage a protest, #MillionsMissing, at various cities around the
country on May 25. What’s missing are millions of dollars of federal research
funds into ME and millions of patients missing out on their own lives, from
attending school to climbing the career ladder to simply spending time with
family and friends.

Of course, many of us are too
sick to attend the protests in person. We’ll be there in spirit — with empty
pairs of our shoes symbolically standing in for us — as we advocate for our
lives from our beds.

Rivka Solomon is a Massachusetts advocate for myalgic encephalomyelitis
who is helping coordinate the #MillionsMissing protest. She is working on a
book about her quarter century with the disease.

About Me

I am a Christian, saved by grace alone through faith alone. I have had the neuroimmune disorder ME, Myalgic Encephalomyelitis, since 1991. From North Somerset, now in N. Ireland. Please see my website for further information about ME.